Families affected by MACS conditions face significant isolation due to their rarity, with many never meeting others like them. Parents often feel anxious about their child’s future and unsupported navigating complex health, education and social systems. Social barriers are widespread - 72% experience them, 60% face bullying, 61% report low self-esteem, and 61% lack adequate support. Left unaddressed, this can lead to isolation and mental health problems including depression and anxiety.

The Big MACS Meet Up is the only national event of its kind for families affected by MACS conditions. It tackles isolation by bringing hundreds of people together to build peer support, confidence and lasting connections through shared experiences and activities. Age-appropriate activities ensure children and young people stay engaged, while all‑inclusive model with financial support to attend, removes barriers and ensures families across the UK can participate and benefit.